Diagnosed Today with Cerebral Palsy

Hello eveyone my name is Yvonne and my i have a beautiful 10 month old baby girl named Maddie.

Today we saw the Dev. Ped. after 6 months of waiting i was anxious about the appointment but i was in no way prepared to hear what i did. My precious bay girl my miracle baby was diagnosed with a mild form of Hypotonic Cerebral Palsy. I am still shocked still unsure what it means still trying not to cry. I am thankful my baby is healthy in every other way and she is still just as happy loving and beautiful as she was yesterday. I know now what is in a sense wrong with her and now i need to start the process of finding all the info i can to help her.

If anyone has any helpful web sites or ideas i would appreciate any info i can get. I want to learn all i can on how to help my lil one.

Comments (7)

There is a foundation called the United Cerbral Palsy foundation and they have offices in each state. You can e-mail them and get a packet of information. They are very nice people.

You might want to get in to see a nerologist to make sure of the diog. It is good you have a dev ped.

First Steps, Indiana's version of the early intervention program, has been great for us. They have therapists, PT, OT, SP, etc. who can really help. With mild cases of CP, the key is getting therapy. My dad has a mild case of CP and the only issue he has as an adult is a slight limp. (he was born blue) My daughter has more issues (she also had a tramatic birth). Through hard work, she is now pulling up to stand at 2 years old. There is a wide range to CP.

Thank you for the info and as far as a neurologist not sure they could do much.The Dev. Ped. said she is not sure an mri or anything like that would show much as she has a mild case and a babies brain doesn't fully develope till age 2. Thats when she said an mri would be the most beneficial to see how much damage her brain has. She doesn't want to put her under for 30mins just to be told they can't tell much yet.

A neuro doesn't just do mri's. They are also good for other things. It's also good to have one on the books in case something else comes up such as seizures. A pedi neuro can take several months to get into. If nothing else you will be an established patient. We started off just seeing our neuro ad needed after she gave the dx since we already see a physiatrist, ortho, eye dr and neurosurgeon. Now that he has seizures though we are more regular with neuro visits. I think a neuro can also do Botox if needed. Ours dies Botox but we go to the physiatrist for that. I just think a good neuro is good to have on your team if possible.

I agree with first steps and a social worker as well. I also swear by our pedi physiatrist but I know not everyone agrees with that. A pedi physiatrist can be hard to come by but I think they are worth the effort

--

Brea

To realize the value of one month: Ask a mother who has given birth to a premature baby.

I am Geneva, mummy to Alina born at 31+5 over six years ago. I noticed that Alina had a problem with her right arm at three months old so we started physio immediately. At about nine months I could see that her legs were affected also and at 18 months we finally got the CP DX. I knew it was CP by then but I still burst into tears as if it was a complete shock. It's just so shocking to get the DX.

However.....we continued with physio and secured help from Early Steps which was amazing. Alina has never taken a break from physio and has indured AFO's, Serial Casting, Occupational Therapy, difficulty writing and all sorts.

Because of rapid brain development and early intervention Alina's physical differences are almost unnoticable today. The arm that she couldn't move at three months is a typical arm with the exception that she raises it in a fist when she runs. She is proud that she even has a little muscle in it. Her legs, which could not support her even at two years old now allow her to run around the perimetor of the park. She's super smart too. Reading Grade 4 books. Seems to be typical with these less physical children.

We still have a ways to go. Alina can't climb stairs without holding the bannister and her spasticity causes her calves to be really tight at the moment. We'll ease that with casting at the end of the month.

What I am trying to say is, what you see today and what your daughter has the ability to achieve from this point is incredible. Try to forget this name Cerebral Palsy and any perceptions that you might have. Just look at Maddie's symptoms and work on those. Educate yourself, contact early steps, secure physio, get every little bit of help you can get, ask mums like us for advice and advocate like crazy.

Here is a commercial which illustrates the journey perfectly. But especially, the positive frame of mind and energy needed:

Does your daughter have a birth history that is indicative of CP? If not, I would suggest you do the MRI/other tests to rule out the causes of the hypotonia. It is fairly unusual to dx CP at such a young age without some kind of significant birth trauma.

Alinnas mommy, wow.... I love what you wrote. It's true, we should not look at the DX, but at a person. It encourages me to hear that your daughter was not able to support herself on her legs at 2 and now she runs..... Wow. My Sarah turns 3 next month, is just starting to stand alone for a few seconds. There is HOPE !